Anonymous letters connect donor families with organ recipients

Anonymous letters connect donor families with organ recipients

By Bruce Deachman

OTTAWA — They come in all shapes and sizes, these people, young and old, rich and poor. What they share is a debt of thanks to the organ and tissue donors, and their families, who made it possible for them to live longer and better lives.

Many of them honour that debt by sending a letter to the donor family.

The letters are poignant, raw, heartfelt and honest, and mean a great deal to both writer and reader. And because transplants are, by law, anonymous in Ontario, the recipients’ letters are first sent to Trillium Gift of Life Network, the body that oversees organ and tissue donations and transplants in Ontario.

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There they are redacted of identifying information before being passed along to the donor families, who may choose to respond via the same route.

This legally forced anonymity protects the privacy of donor families and recipients who may not share similar levels of interest or enthusiasm.

As well, it helps dissuade one side from seeking financial or other gain from the other. A donor family down on its luck might approach a recipient for payment, while another family might voice its concerns about how a recipient is living his life.

In Nova Scotia next fall, the law that keeps donor families and recipients from learning one another’s identity will be changed to allow it among consenting sides.

The move has some people concerned. Dr. John Dossetor, who in 1958 was in charge of the first organ transplant in Canada and just the third worldwide, says it may open the door for one side to take advantage of the other.

“I think it’s our right to use an intermediary,” says Dossetor, who went on in his career to be a noted medical ethicist, “to write a letter to this person who then sends it to the other, and then the other person can write back or ignore it. So this person doesn’t know who got the organ, but they have communicated. I think that’s the best way of keeping it.”

Ronnie Gavsie, CEO of Trillium, notes that people she’s spoken with seem to like the status quo.

“They love these letters,” she says. “They are anonymous but they’re very comforting and I have heard no complaints about the fact that they can’t identify exactly who the donor family or the recipient is.”

She believes the current law protects both sides, ensuring that neither is subjected to unrealistic expectations about how much engagement should take place between them and what the nature of the relationship should be.

“What will tend to happen,” she says, “is that one family will want to be very engaged. The recipient family may want the donor family to become an extended family member, and the other side may feel uncomfortable with that, and may want to stay more at arm’s length. So there are very different, diverse personal choices — they’re deeply emotional — that come into play, and you can foresee circumstances where one family might see the behaviour in a recipient not matching their values. So it’s a slippery slope.”

Sometimes, though, recipients and donor families settle into a comfortable relationship. The letter below was sent in 1999 by Toronto resident Anna Foglia, through Trillium, to Diane Craig, whose 11-year-old daughter, Sandrine, died when the Carp, Ont., school bus in which she was riding was hit by a truck. Anna received Sandrine’s lungs and heart — the rarest of transplant operations.

Only 22 such procedures have taken place in Ontario since 2000.

The media attention paid to Sandrine’s story was enormous, and so when Anna read an article about it in Chatelaine magazine, she was convinced she’d discovered who her donor was. She contacted the reporter to say that while she didn’t want to impose, she’d be happy to meet Diane if she wanted to.

“The reporter kept calling me,” Diane recalls. “He wanted to tell me about Anna, but I didn’t know who Anna was so I kind of let it go; I had met so many people and was kind of embarrassed that I didn’t know who this Anna was.

“Finally one day, he got me in my car and he said, ‘This woman is sure she got Sandrine’s heart and lungs.’ And I said, ‘Well, how would she know?’ And he said, ‘She did send a letter,’ and he started telling her story, and it was everything that was in the letter. So then I knew it was her because nobody would know what was in that letter.”

Still, she initially declined a meeting with Anna. “I didn’t want to be on somebody’s Christmas list because of that,” she says. She and her son, Ken, were busy with the awareness campaign they had started with Sandrine’s Gift of Life, and were loath to see it sensationalized. Plus, she thought, “What if I don’t like this woman? All the craziest things go through your mind, and I decided no, I’m not going to do it.”

But through her work with organ donation and transplants, she was continually meeting recipients who, aware of her and Sandrine’s story, would approach her to thank her.

“I kept thinking, ‘You don’t have to thank me; I’m not the one.’ Then I realized that people who received the transplants, there was a need for them to say thank you. And I thought, ‘You know what? I’m going to meet this woman and just pray for the best.’”

They met in 2005 at the Four Seasons Hotel in Toronto, where they exchanged stories about one another and about Sandrine. Anna told Diane of how, after her transplant, she would dream of a young girl.

“It was really, really difficult,” Diane recalls. “I was looking at this woman that I didn’t know, would have never met before, and talking to her, knowing that the heart and lungs she had in her body, I had made in the first place.

“Was I judging her? Yeah, I guess. One thing I found was that she was a Christian, and I’m a Christian, and that’s important to me. Then they told me that she and her husband had raised money and bought two condos for people who are waiting for transplants so they have a place to stay in Toronto.

“So I knew my daughter had a good home. And I felt really good.”

Still, their relationship works because neither places any expectations on the other. They rarely communicate, save for the odd email or two each year. When Anna fell ill and went in the hospital, Diane visited.

She also gave Anna one of the few things she kept of Sandrine’s — a porcelain doll. Anna’s nieces tell her they want the doll some day, but she tells them that no, it will be returned to Diane or Ken.

And in 2009, on the 10th anniversary of Sandrine’s death, Anna came to Ottawa to speak at a ceremony held at Pinecrest Cemetery in the young girl’s honour.

“I made a promise to Sandrine,” she said that day, “that if her heart keeps beating and her lungs keep taking breath, I will do everything that I can to keep her happy.

“Sandrine, rest in peace, and one day I will tell you all the places I took you and all the things I did in your honour.”

Diane is happy she finally met Anna, although she describes the relationship as odd. She received a note on Thanksgiving from Anna, telling her that her kidneys were failing and that she required dialysis, and Diane knows that Sandrine’s heart and lungs won’t pump inside her indefinitely. She knows, too, that Anna is likely to die before she does. And she knows that will be difficult for her.

“It will be like my daughter dying again.”

But she thinks back to when her daughter lay in hospital in a coma — to look at her, she remembers, you would have just thought her asleep, not dying, and certainly not dead — and she was being asked to consent to donate her daughter’s organs and tissue.

“I remember thinking, you couldn’t just take her organs and throw them away,” she says. “Once they’re buried, that’s it; it makes no difference to me, to her, to anybody.”

Before agreeing, though, she asked Ken what he thought.

“I had to ask my son. He was 16 at the time, and he said, ‘Mom, it’s the only right thing to do.’”

Anna Foglia’s letter to Diane Craig

Dear donor family,

As Remembrance Day approaches, we stop and think of all the men and women who lost their lives for our freedom. As for me, I’m thinking of my donor, whose life was taken and made my life possible to continue.

At this time I’d like to take this opportunity to try and express my gratitude. Even though I think that there aren’t enough words in the world to express the way I feel, yet I know that sometimes just a simple “thank-you” will do.

Through your generous gift, “the gift of life,” as I like to call it, you have opened a world of wonders for me. I’ve been waiting for a treatment like this my whole life. For I was born with my illness and throughout my life I was restricted to what I could do. As a child I couldn’t keep up with the other children. In school I couldn’t join any sports, and as I got older, walking began to get difficult for me. But since my transplant, I am able to do everything that I missed out on.

However, I don’t think I’ll be joining any sports, but I am exercising and really enjoying it.

Thanks to your generous gift I can now hopefully fulfil my dreams. Both my spouse and I are planning to travel often and see the world. I’m going to live life to the fullest and enjoy each and every day.

I can only hope that their other families like yours that will open up their hearts and donate their loved ones’ organs and help someone like me.

Once again, I am eternally grateful for “the gift of life” which you had given me. I think your family has done the most courageous thing on earth. And although we may never meet, your loved one will always be in my thoughts.